Thomas V. Cunningham

Health research participants’ preferences for receiving research results

Background: Participants in health research studies typically express interest in receiving the results from the studies in which they participate. However, participants’ preferences and experiences related to receiving the results are not well understood. In general, the existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations. Methods: This study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate the results, their satisfaction with the results, and when and how they would like to receive research results from future studies. In all, 70,699 ResearchMatch registrants were notified of the study’s topic. Of the 5207 registrants who requested full information about the study, 3381 respondents completed the survey. Results: Approximately 33% of respondents with previous health research participation reported receiving the results. Approximately half of respondents with previous research participation reported no opportunity to request the results. However, almost all respondents said researchers should always or sometimes offer the results to participants. Respondents expressed particular interest in the results related to their (or a loved one’s) health, as well as information about studies’ purposes and any medical advances based on the results. In general, respondents’ most preferred dissemination methods for the results were email and website postings. The least desirable dissemination methods for the results included Twitter, conference calls, and text messages. Across all the results, we compare the responses of respondents with and without previous research participation experience and those who have worked in research organizations versus those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that the results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results’ information included in the survey. Conclusion: We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants’ preferences for receiving the results. The study’s findings highlight the potential for inconsistency between respondents’ expressed preferences to receive specific types of results via specific methods and researchers’ unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants’ preferences for receiving research results.

Objectivity, Scientificity, and the Dualist Epistemology of Medicine

This paper considers the view that medicine is both “science” and “art.” It is argued that on this view certain clinical knowledge – of patients’ histories, values, and preferences, and how to integrate them in decision-making – cannot be scientific knowledge. However, by drawing on recent work in philosophy of science it is argued that progress in gaining such knowledge has been achieved by the accumulation of what should be understood as “scientific” knowledge. I claim there are varying degrees of objectivity pertaining to various aspects of clinical medicine. Hence, what is often understood as constituting the “art” of medicine is amenable to objective methods of inquiry, and so, may be understood as “science”. As a result, I conclude that rather than endorse the popular philosophical distinction between the art and science of medicine, in the future a unified, multifaceted epistemology of medicine should be developed to replace it.

Power and Limits in Medical Decision Making.

Medical decisions are, and should be, made by small groups of individuals interacting together. At the limit, a patient and a physician come together to make a choice (Whitney et al. 2003). More of...

The Problems of Half-Hearted Interdisciplinarity

“The Arts and Sciences of Reading” (Grubbs 2016) is an ambitious article. The intersection of empirical, cognitive literary studies and traditional humanistic literary scholarship promises controversy enough to send everyone packing their books to go home. Exploring this relationship through the disparate (and individually charged) issues of cultural biases toward empiricism, disability rights, prison reform, and even the Common Core, Grubbs identifies several complex issues deserving of slow and careful scholarship. Yet, and perhaps related to its scope, her article falls short of the high standards she rightly champions for close, conscientious, collegial interpretive scholarship. This venue allows for thoughtful response to only some of the article’s contents. We therefore focus our attention on Grubbs’s characterization of the Kidd and Castano (2013) study, which she takes as paradigmatic of the broader trend toward empirical literary research. Grubbs claims that Kidd and Castano “gesture toward, without fully incorporating, literary theory,” and thus “illustrate the problems of half-hearted interdisciplinarity” (86). Focusing her critique on their distinction between “literary” and “popular” fiction, she emphasizes the extent to which such categories have been called into question by contemporary humanities scholars. While this is a fair point, Grubbs’s description misrepresents Kidd and Castano’s use of these terms, as well as the theorists they cite to describe them. In doing so, she unfairly paints them as naive to a debate that that, on our reading, they take quite seriously. Grubbs’s assessment centers on the “decontextualized” use of Roland Barthes’s categories of “writerly” and “readerly” texts, which he intends as idealized forms that serve primarily to represent the kind of binary divisions he then sets out to dismantle. After reading Grubbs’s account of Kidd and Castano’s article, one might be disposed to join in her dismay at scientists who skim the surface of literary theory to co-opt the bits and pieces that fit neatly into the introductory remarks of a study whose rationale, design, and conclusions are otherwise uncomplicated by such work. Yet readers who turn, as all good humanists will, ad fontes will find that Kidd and Castano devote nearly one-third of their article to defending “literary” fiction as a distinct and useful category of texts. Beginning with an acknowledgment that this categorization has been a controversial one, Kidd and Castano point out that many literary theorists nonetheless recognize that some texts operate in more complex ways than others. Kidd and Castano are interested in features of the text itself, arguing that specific kinds of texts both demand and cultivate specific cognitive skills in the reader. They support this claim by appealing to Barthes, Mikhail Bakhtin, and Jerome Bruner, whose work, they say, helps to identify specific characteristics of literary texts: that they demand active engagement with multiple narrative voices, unsettle established interpretations, and promote consideration of alternative meanings. Kidd and Castano turn to Barthes’s “writerly” category to describe the notion of active engagement, in all of the two sentences they spend on him before moving on to other theorists. In our view, they include his categories to make the broader point that literary theorists have long attempted to describe “literary” fiction in terms of the specific psychological processes involved in perspective taking, or Theory of Mind (ToM). Thus, Kidd and Castano have not merely inserted a few literary terms into the introduction of their study. Rather, they have grounded their entire inquiry—their rationale and hypothesis—upon their argument in defense of “literary fiction” as a category, which they propose is distinguished, at least in part, by the way in which it “uniquely engages” these specific psychological processes (Kidd and Castano 2013, 1). In our view, if Kidd and Castano raise concerns for inappropriate interdisciplinarity, it is not because they make a flawed or even a poorly supported argument. The problem lies in the implication that they turned to science to “prove” what the humanities can only suggest. When any discipline assumes an uncritically privileged perspective, it effectively nullifies the possibility of true interdisciplinarity. That may well be the case for some empirical literary scholars. It could be the case for Kidd and Castano, and Grubbs seems to believe that it is. Yet our reading of their work does not support this characterization. On our view, they turn to empirical methods to ask specific, quantifiable questions for the purpose of complementing rather than co-opting traditional humanities scholarship. This is where Grubbs approaches what could have been her most persuasive analysis—an exploration of the